The meds make my mouth feel like I've been sucking on quarters all day. I've been chewing gum a lot lately and that seems to help a lot.
Its the dragon dying it smells like that !!!
Thank God it gone now 7 weeks post in fact it has commed and goes during whole tx. Part of the roller coaster ride i guess its a ride in many dimensions!!!!!!!!!!
Just for the record:
I don't experience any strange mouth odor, but the taste I feel is kind of very bitter - didn't have it before tx. I've disregarded it up to now and it doesn't bother me a lot as I know it's from the meds.
Well if you've just started treatment the meds do come pouring out of your pores and some of us have had a problem with that. Literally it almost drove me crazy the first few months/weeks (can't remember how long anymore) because I swear i could smell the meds everywhere and was so paranoid that others could too.
It did dissapate in time - either you get used to it or the body gets used to it and isn't trying to reject as much or something that I can't explain.....
But gum did become my best friend too (altough I swear I could smell it on my pillow and in my sheets from the night sweats).
I would't spend a boatload of money because if it is the meds - you won't be able to get rid of that because they ARE deep inside of you.
personally, don't think it has to much to do with liver conditions. i had this before bc i was bad with sinus issues and there were little white globs of bacterial synthesis hiding in pores in my tonsils. sometimes they would fall out themselves others i feel something itchy in my throat and would try to force it out with my pinky but don't do that bc that'll cause inflammation. try saline nasal sprays, cheap and cleans your nasal passages nicely. could also do with earwax issues, the nose ear and throat are all connected. and make sure you brush your tongue and use mouthwash daily!
The white globs in tonsils are called tonsil stones. Both my grown children get them. They do cause a really foul odor because they're actually trapped particles of food, caught in the tonsils, decaying. If you have your tonsils, check in your mouth with a mirror. If you have them, you'll probably be able to see them.
If you google this there's info on the net about them. Rebounding (jumping on a mini-tramp) is supposed to help stimulate the immune system and is said to clear up tonsil stones.
Problems with the gums and teeth can also cause breath odor. As lala said, there are so many things that could be responsible.
From looking at your profile, it seems that you're not on tx, is that correct? But if you are on tx, the drugs can do all sorts of things to our senses.
Best of luck to you, hope you figure it out.
That's a good question and it's one I was reading about a couple of days ago. There are some trials being done on this very subject with various results. I wonder if the unfortunate persons dx with extensive fibrosis have a distinct smell to them? The subject came up when I noticed a response from some ppl at work when I would approach them. Now it could be my paranoia, or just the fact that ppl I work with now know that I have HepC and it's that reaction of "stigma". I didn't tell them that I have HepC, but alot of them heard thru the in house "gossip network" that exists. Anyways, I started reading if there was any tell tale signs of ppl with HepC and according to this one test that was done you could receive results of fibrosis by giving this breath test. At least in this one study there does seem to be a correlation between breath of a fibrosis infected HepC patient and a positive results in this test. good luck
[13C]-Galactose breath test: correlation with liver fibrosis in chronic hepatitis C.
Mion F, Rousseau M, Scoazec JY, Berger F, Minaire Y.
Fédération des Spécialités Digestives, Hôpital E. Herriot, Lyon, France. [email protected]
BACKGROUND: The galactose elimination capacity test is a quantitative liver function test that has been shown to be a potential surrogate marker for death in advanced chronic liver diseases. However, this test lacks sensitivity in early liver disease. The goal of this study was to evaluate a [13C]-galactose breath test (GBT) in a population of patients with chronic hepatitis C. DESIGN: The GBT was performed in 10 control subjects and 50 patients with chronic hepatitis C; the results were compared with the METAVIR pathological scoring of liver biopsy specimens and with standard biochemical liver function tests. RESULTS: In 10 patients, oral vs. intravenous administration of galactose yielded similar results for the GBT (3.01% +/- 0.12% dose h-1 for oral galactose vs. 2.98 +/- 0.21 for intravenous). The GBT was then performed orally in the remaining 40 patients and 10 control subjects. A significant difference was observed between control subjects and patients (4.51% +/- 0.18% vs. 2.97% +/- 0.14% dose h-1, P < 0.0001). A significant difference for GBT results was observed between each fibrosis stage, but not with regard to the activity score. CONCLUSIONS: The GBT results are dependent on the severity of liver fibrosis in chronic hepatitis C. Further studies are needed to evaluate the usefulness of the GBT for the follow-up of chronic hepatitis C.
When my husband was first diagnosed, I mentioned to his dr that he had a sweety, sickening smell (something like decaying fruit) coming not only from his breath, but from all his pores. She said this was common in hep c end stage disease. He had a TP, and the odor went away, the hep c has returned with a vengeance, and so has the odor. This odor is not from the drugs for TX, because they have elected to wait for the next round of drugs to come out. It seems to me that the worse the disease, the worse the odor.
It could be the remnants of the Bastrop Paper Mill fighting for revenge. Remember Stink Creek? (You would have to be from Louisiana to know what we are talking about)
When i wake up in the morning my mouth is pretty awful tasting....im not sure if anyone can smeel my breath during the day but ive asked people if they get an odor from my breath and all seems ok....one thing i do notice is if i like my lips i can taste the Boceprevir...its a different taste on the lips....its almost got a sweet taste...i kinda like it....i know its the BOC cause it the taste is more intense just after popping the blues
Thanks so much for all the responses. The GBT test is interesting and I'm going to have a non-invasive test for my level of fibrosis. I Treated in 2004....responded at 12 weeks to negative, then relaspsed at 24 weeks. I don't want to go through that again at 70 years old. Genotype 2b.
I live 20 miles from Bastrop, Louisiana and can relate. There's nothing quite like the pungent odor of a paper mill. The folks in Bastrop would take the smell back if the mill would re-open!
I had the WORST FILMY DISGUSTING taste in my mouth for 52 weeks of tx. Luckily I llive alone...It really was horrible....among many other things..I felt like the meds were literally coming out of my pores and they were.....
Rebounding (jumping on a mini-tramp) is supposed to help stimulate the immune system and is said to clear up tonsil stones.
LOL seriously?! that's just another excuse to get one and i love to be outside the air has been heavenly fresh these couple of days.
I experianced the same as Charm.
Most of my family is from Bastrop and Union Parish. I am going “Up There” in April for a family reunion. Yes it is sad, now that the Mill is closed I am afraid Bastrop may be doomed.
A search for ‘fecor/fetor hepaticus’ might be in order; there seems to be some confusion as to the spelling, as well as the cause, but I’ve certainly heard that halitosis can be associated with late stage liver disease. Of course, there can be all kinds of causes for bad breath; so don’t freak out over it by itself. Diabetes can also cause what is described as a ‘heavy fruity odor’; it’s probably a good idea to mention it to your doctor, or even your dentist; both are trained to recognize this, and use it for diagnostic purposes.
Good luck, and let us know how things work out—
I'm not in treatment, but my Doctor and Lab tell me that elevated Platelet count is one of the first indications of fibrosis. However, the acceptable range is 140 - 440. Mine is 237 and is down from 275. I'm real happy with that. Other early indicators of fibrosis is Total Protein and Albumin. Low is bad on these markers and mine are at the high end of the scale.
I'm 70 years old with a viral load of 2,300,000 that also stays steady. I wouldn't go through treatment again for any reason. That Riba and Interferon is way worse than my Hep C. Maybe I'll reconsider when the Vertex drug becomes available. I'm 2b with no symptoms, normal ALT and AST, have no clue what my stage is cause I'm not a candidate for a biopsy. I don't think I want to know. All I do know is that the current treatment tore me up, and made me a depressed, fatigued, worthless person whose hair was falling out, white and red cell counts crashed. I was negative at 12 weeks, then relapsed. CT Scans, MRI's, and Untra Sound show no abnormalities. My Ammonia levels are perfect, yet I have spells of Hepatic encephalophy about every 3 months.
Also, keep in mind that dry mouth (pretty common sx of treatment) can cause alot of problems in the mouth and throat. The lack of salivia allows bacteria and fungi to grow as well as lead to tooth decay. I was noticing a strange breath and started flossing regularly as well as keeping water by my bedside to sip during the night. Seems to be subsiding.